ALS clinic improvements

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
445
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
The neurologist who leads the ALS clinic at Dartmouth -Hitchcock is retiring and I have an opportunity to provide input on improving the clinics. I have made my own list that is specific to DHMC, but I wondered if you could share things that you really appreciated or disliked about the clinics you have attended?
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
392
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
What an honor, Jessie! Enjoy this opportunity to improve this process for others in the future. 🙌

Mine is nothing exciting, but one thing I remember is they try to schedule patients with similar progression at the same time period so as not to overlap in the waiting room with someone much further along.
 

KenM

Active member
Joined
Jun 21, 2019
Messages
44
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
City
Charlotte
I would suggest better clinic communication with pALS. I was concerned at lack of communication from my clinic in the first months of the COVID19 crisis and again with the current uncertainty over how and when we will be eligible for the COVID vaccine. Clinics also need to be better at communicating about ALS clinical trials and how to enroll, and at encouraging and pALS to complete the ALS national registry survey. I hear there is a lot of variation in communication on these issues, and there is no reason for that. Thanks for asking!
 
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